(04-04-2013 10:40 PM)archangle Wrote: Once you get used to the machine, many people don't feel the pressure. Feel the air stream blowing out the vent holes with your hand when you first put it on. When you feel like it's not blowing, feel the air stream to see it's blowing. You can also lift up the edge of the mask and feel the air gush out to convince yourself.

You got screwed with the Respironincs SE. Using a brick CPAP to treat a patient is like treating diabetes and only testing your blood sugar once a year or so. It's also dumb because you need another sleep test every so often if you have a brick. With a good CPAP, you collect data like a limited sleep test every night and don't need a new sleep test as often.

Hey Archangle!

Just a quick, quick comment before I babble:

I STILL SNORE! IS THAT AN INDICATION THE PRESSURE ISN'T OPTIMUM. I'LL BET IT IS....

You're not the only one telling me I bought myself a lemon with the Philips Respironics REMstar SE System One!

I live in Toronto, Ontario Canada. I am on a health-related disability pension with the Ontario government. As with every Canadian, healthcare is publicly funded by the government of Canada, but for "extras" like CPAP machines one either forks out for it themselves or, like me, has coverage (mine is government but I'm sure there are many health carriers that give partial or full coverage) that will kick in to pay a SET FEE for certain services and equipment.

Strangely enough, the government of Ontario's published rates to cover a CPAP machine works out pretty much exactly to what the Homecare provider charged me for the unit.

Pretty fishy, huh?

The loaner they lent me initially was an EXCELLENT device: LCD screen, flywheel menu, and it was a data collection POWERHOUSE. It monitored my progress, throughout the night, and over a period of 7 days it built up a sort of "treatment blueprint" based on my events and what worked, and what didn't. The provider was even nice enough to show me all the amazing statistics and graphs these machine was able to create. I also used SleepyHead software to track my own progress (but I didn't tell the Provider that lol). I was able to see that my AHI index was getting better with each night, events were WAY down from the beginning of therapy, and the machine itself had the software to not only record all this, but to automatically change my pressure during the course of the night, confirm the efficacy of its own decision, and then use that pressure again.

The machine settled on a pressure of 10 during most of the night. My apnea AHI was 0.49 on the last night with that particular device. Snoring and the other indices were also WAY down. It was exciting to actually SEE the reasons why I was feeling so very much better in such a short period of time.

So, I'm stuck with a government-approved "brick" now, as the lingo goes, and I have to make the best of it.

I am still snoring.

I have acid reflux once in a blue moon which makes compliance difficult. I'm still not good enough in my mind to look to my compliance when I'm semi-conscious. That's still a hard one for me, but it's getting better every night.

I am currently set to 11, but one way or another I am going to get that pressure up, and see if I can't feel better. I believe this machine is good, but a bare-bones model that needs active patient participation to work at its best. As my body is in the process of changing (I'm actively going to the gym, something I was too fatigued to do before!) I bet my needs are going to change, too, but I gotta get the snoring cut down.

I am definitely not disagreeing with what you've written. The Philips REMstar SE System One isn't luxury CPAP at its finest. But it IS covered through the health insurance I have (government of Ontario ODSP) and it IS working for me.

I just feel passionately it could work better, and if I was empowered to manage the damned thing myself I think I could do just as well as the Homecare provider's people.

My Respirologist runs a HUGE empire on the public tit. He's constantly swamped with patients. He did to me what he most likely does with everyone: he read the first study, got the compliance data and the "mini study" data from the loaner machine (an expensive model that actually collected data, adjusted the pressure automatically, produced reports, the works), took a look at my second study (a study where they monitored my CPAP use, adjusted the pressure and so on) to get the final numbers and write me a permanent script.

I got what the government health plan would pay for. So I must work with what I have.

I am not going so far as to say that the machine is worthless. This "brick" as we like to call it here (lol) has given me my quality of life back. The transformation has been so radical, I actually get excited and exuberant during the day when I realise I've been up since 6am, it's 8pm and I could still go another 6 hours. Fibro pain is down, restless leg is down, and my mood is UP.

So, rather than dwell on what a complete piece of shite it actually is, the mechanical quirks that always leaves me wondering if the damned thing is working correctly, and "fine tuned" enough to keep me at the pressure I was prescribed, I need to develop an action plan to monitor the results daily (a log), keep track of what's working versus what's not, and get into that damned setup menu to bump my pressure up if and when I feel it could be better.

Oh, believe me, the Homecare company I got this contraption from will be hearing from me at 9am on Monday morning. I'm going to call them, insist on a same day appointment, and have them look at my machine for defects. And this is something I will repeat as often as I recognise that the treatment is not working its very best for me. Perhaps it will annoy them into giving me a better model (not freakin likely lol) but more realistically they will have no choice but to examine the unit, correct any errors and, if need be, replace this machine.

Ugly, you've got a rather harsh style, but I like it. You keep right on doing what you do. Sounds a bit like "tough love", but I think your heart is in the right place. I don't know how many months I suffered with undiagnosed sleep apnea, I don't know how much of my life has been "held back" by the completely LOUSY health I was experiencing, but I do know that now that I'm getting better there is NO STOPPING me. I'm going to get healthier, lose the weight that may have been the catalyst for bringing on "severe" apnea in the first place, and I'm going to enjoy an energetic and active lifestyle. No doubt about it.

I'm hoping the pressure is off, so the clinician at the homecare place will be forced to go into the setup menu. If he or she does, I will be ready, chair positioned in place, to monitor the key presses and try to duplicate them myself to get the hell in there. With a lemon like this, it's even MORE important that a patient can try sensible changes to the pressure for him or herself. I will gladly and unashamedly harass my Respirologist and the staff at the homecare place. I don't have a problem going in every week to bitch. But it would be a lot simpler, more time-effective and easier on me to tweak it on my own. I would save a lot of time and frustration that way.

I don't like the feeling I'll have to fight tooth and nail to get heard and assisted, but I'm fully prepared to do that.

(04-07-2013 07:14 AM)Greggers In Toronto Wrote: The Philips REMstar SE System One isn't luxury CPAP at its finest. But it IS covered through the health insurance I have (government of Ontario ODSP) and it IS working for me.

Yes. That's the first one they suggested for me. Yes I'm also on ODSP. I took a dislike quickly. But then again it was NOT working. The buttons kept sticking and it made navigating through the menus extremely difficult. That's when the ResMed S9 Escape was offered to me. At that point I had just joined Apnea Board and I learned about the AutoSet. My DME told me that I could only get that if my otolaryngologist prescribed one for me. My sleep study surprisingly stated I needed the pressure I had all along. I knew that was wrong because I was having so many sleep issues. I got the doctor to write a prescription for an AutoSet, kept pestering my DME for three months and finally they got me one. So that's covered by ODSP/Assistive Devices if the doc sees a need for it.

However, the fact that your REMstar worked for you from the beginning - well, that was something that I never had. It malfunctioned from day one and I guess that's why I'm so bitter about it.

Quote:I got what the government health plan would pay for. So I must work with what I have.

IF it worked for me that's what I'd have too. But in my case there were serious operational issues. I'm sure I wouldn't feel so harshly against one that WORKED. Mine did not.

Quote:I am not going so far as to say that the machine is worthless. This "brick" as we like to call it here (lol) has given me my quality of life back. The transformation has been so radical, I actually get excited and exuberant during the day when I realise I've been up since 6am, it's 8pm and I could still go another 6 hours. Fibro pain is down, restless leg is down, and my mood is UP.

Congratulations and my continuing wishes for your good health.
It's amazing what a working machine can do. But since mine didn't work properly, it was h3ll.

Quote:Ugly, you've got a rather harsh style, but I like it. You keep right on doing what you do. Sounds a bit like "tough love", but I think your heart is in the right place.

Seriously though, I don't mean to be harsh. I was just left with bitter feelings from using it. In fact, upon acquisition of a ResMed AutoSet, I've been getting decent sleep unlike I've had in many years! Oh I was a pathetic sight this morning doing some post-winter raking, sitting on my walker while maneuvering a rake. That made me want to lie down in the afternoon for a few hours. But other than that, my need for afternoon naps has decreased tremendously since getting the AutoSet. I can't say that about the Tranquility Quest (my original machine), REMstar SE, or S9 Escape.

And of course those with bad experiences can tend to have more to say than those who proclaim the good points. I apologize because this has made me so vocal about the ones I was not compatible with.

Quote:I'm hoping the pressure is off, so the clinician at the homecare place will be forced to go into the setup menu. If he or she does, I will be ready, chair positioned in place, to monitor the key presses and try to duplicate them myself to get the hell in there.

Don't count on it. My DME at VitalAire was extremely secretive, holding the machine in a way so she knew I couldn't see what she was doing. She seemed dumbfounded when the doc gave me a new prescription and instead of waiting two weeks for my VitalAire appointment, I did it myself. "Oh, well you seemed to have found out how to change the pressure yourself. I guess we don't have to worry about that during the appointment."

Meanwhile, somebody outlined the steps to take with the REMstar SE, I can't vouch for whether or not it works but you can check out the thread to see if it works.

Quote:Cheers, ummm, Ugly. lol!

I see myself as ugly, and that's why I use the name. Indeed I'm ashamed of it but there's no sense in being dishonest about it.

I am currently at a pressure setting of 11, and I'm still snoring with the mask on. Can I safely try to bump it to, say, 13? Or would that be too drastic? I haven't been compliant in the last few days as I've had some problems with reflux and my general comfort level with the mask. I'm struggling to imprint in my mind, even when I'm semi-conscious, that the mask NEEDS to be on. It's hit and miss, but it's getting better. Compliance was a LOT better with the A-PAP machine they loaned me to do the "mini-study" to set the pressure.

I'm still waiting on the results of my last sleep study to find out what pressure the clinic came up with. So far, my Respirologist was happy with the machine's pressure of 11. Until further notice...

I found out how to get into the setup menu, but I'm not 100% on the procedure. All I know, is the unit needs to be on, but not actually running. You turn it on, then press the power button again, then you're in this sort of "ready" state. Press the ramp and the left arrow button simultaneously (making sure that you do not accidentally press BOTH arrow keys, it's difficult because the keys stick) and after holding the ramp and left arrow key you will see P-1 pop up on the display. From there, you can use the left and right arrow buttons to navigate, cycling through the little icons on the display until you reach your desired setting. Then, press the power key, it will blink, and you can use the left and right arrows to adjust the setting of your choice.

Press and hold ramp and the left arrow button for 5 seconds, and it will flash "P-0" and you'll be back in regular mode.

The reason I know this is because I brought my unit back to the home healthcare place that handled the purchase with my insurance. I explained what was going on, she looked at my therapy hours averages (the only "statistics" that this device records, and it records NOTHING else) and agreed therapy seemed to be not working for me. I explained that the C-Flex option (which is supposed to give some relief option on the exhale) didn't work, and never appeared to work in the first place. She measured the pressure on her device. She appeared to agree with me. I next explained that the motor hummed and whistled oddly. She listened, and offered no real comment. When I told her I wanted to look at getting it repaired or replaced, she ran to her boss and got him to come in. Time to do battle...

Basically, he began by giving me a lecture and telling me there was nothing wrong with my unit. At this point, I guess I got a little upset. I INSISTED, not requested, but insisted, that he bring me an identical unit to allow me to experience C-Flex with a "functioning" unit... And I have to admit, the C-Flex was basically the same on his unit. Admittedly, his unit was quieter, he said, but it was to be expected that each unit might sound a little differently, depending on the kind of pressure it had been running on and so on. While I didn't necessarily buy it, I had to concede it made perfect sense.

I ended by apologising and declaring that, had it not been for my insurance i.e. if I had my own resources, I probably would NOT have purchased this model. The C-Flex doesn't work like the diagnostic loaner model I had prior to this one and I feel that variable pressure is the best treatment for me. Unfortunately, because I'm on a government sponsored pension (ODSP), this is the only model that's approved for purchase. I wasn't given the option of "kicking in" my own funds to buy a better one, either.

So, I am stuck with this unit and I'll have to make the best of it.

I'm going to be struggling to get used to this, but in the meantime I see no harm in experimenting with the pressure to try and get a "general" pressure that works better for me. I'm cautious, considering that my compliance is down the past week and adding more pressure might make it even MORE difficult to get into the routine. But a lack of a therapeutic pressure may be one of the reasons I feel that the CPAP therapy isn't working as good as when I started with the APAP loaner.

(04-08-2013 09:07 PM)Greggers In Toronto Wrote: I am currently at a pressure setting of 11, and I'm still snoring with the mask on. Can I safely try to bump it to, say, 13? Or would that be too drastic?

Do it gradually at smallest increment and access the situation
Sometimes just a small bump or change sleeping position might just do the trick
Tennis ball placed in sock attached with safety pin to back of pyjamas or T-shirt will help staying on your side

(04-08-2013 09:07 PM)Greggers In Toronto Wrote: I am currently at a pressure setting of 11, and I'm still snoring with the mask on. Can I safely try to bump it to, say, 13? Or would that be too drastic?

Typical recommendations suggest changing it by one point or maybe ½ a point at a time, give it at least a few days and see how it goes. However, I too have gone beyond that and tried changing my pressure from 8 to 10. When I got the S9 AutoSet that's the only thing that's really helped.

Quote:Compliance was a LOT better with the A-PAP machine they loaned me to do the "mini-study" to set the pressure.

And it will be again, although "compliance" seems to be a term for those in the United States in qualifying for insurance coverage. It seems to have little validity elsewhere. It's meaningless for me
since the machine is officially mine and I don't have to do any more follow up appointments.

Quote:I'm still waiting on the results of my last sleep study to find out what pressure the clinic came up with. So far, my Respirologist was happy with the machine's pressure of 11. Until further notice...

Hopefully you have a better time than I did. I was really miffed when they determined my pressure at the sleep study to be the same as it already was (8) since that setting was not working for me at all.

Quote:I found out how to get into the setup menu, but I'm not 100% on the procedure.
[quote]

Hey that rocks, since that's the start of it. I no doubt would have found the setup menu for the SE as confusing as the rest of it.

[quote]
Press the ramp and the left arrow button simultaneously (making sure that you do not accidentally press BOTH arrow keys, it's difficult because the keys stick)

Aw, man, that was the last straw for that machine, the keys sticking, and I said I can't work with it. You might have a good excuse to trade it in.

Quote:Basically, he began by giving me a lecture and telling me there was nothing wrong with my unit.

I think he's paid to say that.

Quote:Unfortunately, because I'm on a government sponsored pension (ODSP), this is the only model that's approved for purchase. I wasn't given the option of "kicking in" my own funds to buy a better one, either.

They don't seem to like that idea. If you can get your doctor to put out a prescription for an AutoSet then they would have no more excuses. It worked for me. (And as I said I too am on ODSP)

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